Colorado’s insulin cap brings savings for people with diabetes, but some struggle with program

Colorado’s insulin cost cap can save people with diabetes hundreds of dollars a month, but some patients have reported confusion about how to take advantage of it.

A law passed in 2019 and expanded in 2021 limits the out-of-pocket cost of insulin to $100 per month in state-regulated insurance plans, including those sold on the individual marketplace and some employer-sponsored plans. People whose coverage isn’t state-regulated can fill out an annual application to buy insulin for $50 a month.

In theory, a patient with an insulin prescription can print out the application and bring it to any pharmacy, along with proof they live in Colorado, and receive a month’s supply of the drug. The pharmacy can then seek reimbursement from the insulin manufacturer.

It hasn’t always worked that smoothly.

Melinda Galjour, who moved to Colorado last year, said it’s been a challenge figuring out how to access the state’s insulin program. When she took the application to the pharmacy she normally uses in Silverthorne, they didn’t know what to do with it, leaving her with the prospect of paying $500 out of pocket for a month’s worth of insulin.

Galjour asked the Colorado Department of Regulatory Agencies for help, and they sent a link to share with the pharmacy and suggested she could file a complaint. In the meantime, she was able to get this month’s insulin using a manufacturer’s discount program, but people who are running out of insulin shouldn’t have to make multiple calls and pharmacy visits to get their prescriptions filled, she said.

“It’s not my job to educate and bring a website link to my pharmacy about a state-run program,” she said.

Vince Plymell, spokesman for the Colorado Division of Insurance, said 40 people have sought help or filed complaints about difficulty accessing insulin through the program since January 2022. The state doesn’t track how many people have downloaded the insulin program application or attempted to use it.

Gail deVore, a diabetes advocate in Denver, said the state could make it easier for pharmacies to find clear directions about the program and how to seek reimbursement. She periodically gets calls from people who are confused about how to get affordable insulin and other diabetes supplies, and tries to refer them to resources.

Studies have found that when people with diabetes are exposed to higher out-of-pocket costs, their outcomes worsen. One paper, looking at 40,000 patients whose employers switched to a high-deductible plan, found that the odds those with diabetes would need emergency care or be hospitalized for low blood sugar rose about 2% each year after the switch, and that the odds of needing care for high blood sugar rose 5%. That could reflect that skipping or reducing medications is more likely to cause high sugar levels than low ones.

Karisa Hunt, of Commerce City, said the state’s insulin cap was a major victory, but people with diabetes still face significant out-of-pocket costs.

Hunt was diagnosed with Type 1 diabetes when she was 4, and for much of her adult life, she had to use a less-expensive version of insulin that didn’t allow her to control her blood sugar tightly. That caused her to lose her sight in her left eye, and impaired her right eye’s vision.

“It was, go on this insulin I can afford or go to the emergency room again and again and again,” she said. Diabetes “came for my eyes, and I’m lucky, because it could have come for my kidneys.”

Now, she uses a short-acting insulin delivered by a pump, which keeps her blood sugar levels under control. The cost of the insulin itself is capped, but she still has to pay about $400 out of pocket for pump parts every three months. It’s a cost her new job allows her to afford, but it’s not feasible for everyone, she said.

“The insulin itself is now the most affordable part,” she said. “I am buying bits of plastic and bits of metal, and why is it costing hundreds of dollars?”